Ankylosing spondylitis: anyone else?

Some patients use oxy~~~I could not. Morphine sulfate (low dose.) I don't know what Mayo Clinic has to say about that?

I can’t take opiates they make me sick and Morphine dose not work on me so I take Gabapentin 600 mg 2x daily and Meloxicam 15mg 2x daily it don’t really do much to help nothing really dose help me ❤️❤️

@jlf2, you will notice that I have moved your post into an existing discussion on the same topic. @jenniferhunter had shared this same discussion with you. You can find it here now:
- Ankylosing spondylitis: anyone else?: https://connect.mayoclinic.org/discussion/ankylosing-spondylitis/

I see you've jumped in and connected with other members since as well.

Hi there- I don't have AS, but I have a related condition my rheumatologist refers to as seronegative spondyloarthritis--the difference is that my inflammatory arthritis only affects my peripheral entheses (the place where tendons connect to bone), and so far there is no involvement of my spine.

Do you have a confirmed diagnosis yet, and are you working with a rheumatologist, and what treatments have they recommended? That would be the best starting point because treatment requires prescription medications (though you can supplement with other strategies too).

In my condition, I don't have any elevated inflammatory markers, which made it very difficult to diagnose (which I understand can also happen with AS), so the diagnosis was made clinically (based on my health history, family history and symptoms). As it was explained to me, the first course of action are high doses of NSAIDs. If those can't be tolerated or aren't effective, there are some oral medications, and last options are biologics such as Humira, Enbrel, etc.

I have one kidney, so long-term use of NSAIDs is not safe for me; I had to jump straight to sulfasalazine (which did nothing but make me nauseous and turn my urine bright yellow!) and then to Enbrel. Now I take Humira. It relieved most of the pain we attribute to my inflammatory arthritis, but I still have pain from co-occurring conditions. I also do a lot of PT, gentle exercise, and I've tried acupuncture. I also take low dose naltrexone (LDN) for fatigue. It's suspected to also act as an anti-inflammatory, but the research isn't conclusive.

All the best to you!

We live in NE Arkansas. My 38 year old son had a T2 to L3 back reconstruction at UAMS in 2016 due to
Scheuermann's kyphosis.. He was diagnosed with AS in 2017. Part of the fusion failed in 2019 so another back surgery to correct at UAMS. In 2017 they started him on methotrexate for about 6 months and due to adverse reactions switched him to humira. This last year he has had extreme hip pain and falls due to the leg collapsing. Finally in May of this year, one surgeon ordered an MRI with contrast of his hips(he had had all kinds of X-rays, MRI's that showed nothing, yet he was having severe pain. But the MRI with contrast showed AVN in both hips and he was having more pain in the left hip. So they Finally got his hip replacement scheduled for July 27 at UAMS. He went into an inpatient PT facility for three weeks prior to his hip surgery to try to build up his upper body strength because he is 6' 4" and weighs 330. So he is a big guy and we knew I wouldn't be much help. I picked him up from the rehab facility here in our home town, we drove to Little Rock that same day, stayed overnight in a hotel (LR is 2.5 hours away). We went to UAMS early the next morning for the left hip replacement. The surgery took less than 2 hours, but he was in recovery for over five hours. After his surgery, they could not keep his pain controlled. We were there for five days. They sent him home to an appointment with his pain management Dr in two days. He told me that it felt like something had been done to his shoulder during surgery because it really hurt. He had a dislocation on his other shoulder at 17 and knew what that felt like so he kept comparing it to that. In the meantime, we got home on Tues night after an agonizing 3+ hour ride home trying to make stops so he could get out and stretch. His surgeon said the hip had totally collapsed. I will attach picture. I took him to his pain management doctor on Thursday at noon 1.5 days after getting home from UAMS and due to his low oxygen and BP, they called an ambulance to take him straight to ER here in our hometown. He had PE's in his lungs and was very weak. They admitted him to hospital for four days on blood thinners. Then sent him home on Eliquis for 6 months. We went to follow up with surgeon at three weeks and he had started swelling in both legs from hips through feet. His PCP had him on 40 mgs lassix a day, but this was not helping with the swelling. At the three week follow up with surgeon, my son ask the surgeon where they placed his arm during surgery because he was having pain in his shoulder. The surgeon just brushed it off and said they had put his arm on pillows. His incision is on the back of his hip. The surgeon had no idea about the swelling but upped the lassix to 60 mgs and didn't refer him to anyone to have his shoulder checked or tests on the swelling. This past Fri, Oct 13, my son had an RA appt because they had tried to add a med to the humira that he had a reaction to. So we went the 2.5 drive to UAMS for the RA appt. They are changing him to enbrell. But the RA dr saw his red, hot to touch shoulder and told him to go to ER for an X-ray. He went. Not only is his shoulder broken, but he has severe AVN in this left shoulder! They kept him over weekend and did an MRI. He also has a crack in his right foot. Right now, he has not recovered from left hip replacement, needs right hip and left shoulder replaced due to severe AVN. They started calling Monday morning to schedule left shoulder replacement. He has not been released from the surgeon that replaced the left hip and that we believe. His shoulder was broken during this surgery! That appointment for hip is next week! He is afraid to use UAMS for this shoulder replacement- and I understand. This is physically and mentally taking its toll on him. Does anyone have any experience using the Mayo Clinic? We are in desperate need of help. The pic is his left hip joint.

I just bought a brace type was it wrap that has heat and massage and it's chargeable . I wear it often to clean and do chores ., it also has a pump to make it tighter - I love it
Also I get multiple shots in my back

I am a 72 year old female and was diagnosed with AS probably 20 years ago. I had symptoms for much longer than that. Excrutiating hip pain and lower back pain. I was first diagnosed with RA. My Rhuematologist wanted to put me on one of the more expensive DMARDS but I never thought my insurance would pay for them so we started at the very bottom, old tried and true Sulfasalazine, aka Asulfadine. The purpose was to slow any progression of either RA or AS. Over time, the dosage was increased to 1500 mg 2x daily which was the limit. . I then was diagnosed with Crohn's Disease, for which they prescribe sulfasalazine as well but for 2000mg 2x daily. And so it remains to this day. I don't believe it is any longer doing anything for me, but the Dr. is afraid to take me off for fear it will create a worse problem. A few years back they did start me on Humira. All of these drugs lower your immune system and leave you more open to infection. With Humira, if you get any type of infection, you must stop taking it. I ended up with Cellulitis on both legs on 3 occasions over about 6 to 7 months. I was forced to stop Humira for good because it caused too many infections and I was off it more than I was on it. I don't believe Hunira is one you can take on call when the pain is bad. Additionally, I have COPD which was the reason they didn't want to give Humira earlier because it does affect one's breathing and they thought it would kill me! So it remains, each autoimmune disease affecting the other making life miserable. I would strongly suggest that your son be on one of the disease modifying arthritic drugs to stop the disease from progressing. I never had that opportunity when I was younger because they couldn't diagnose what I had. I wish you good luck, and suggest he keep moving which was something I didn't do well.

@kavardell I wanted to check in with you and ask if you have any updates on your son's bone necrosis and joint replacements. I had a cervical spine surgery at Mayo in 2016, but not as extensive as your son's surgeries.

Jennifer

How do I read this reaction? I don't seem to be able to find it.

I was diagnosed with Ankylosing Spondylitis about three years ago!

Have been taking Simponi Aria by infusions every 8 weeks! More bad days than good! Lower back is very painful and takes all my energy away some days! Does anyone have any experience with this painful disease?